By JoNel
Aleccia and Melissa
Bailey MAY 22, 2019
Two
years ago, nursing professor Kim Acquaviva asked a group of home care nurses
whether they thought she was going to hell for being a lesbian. It’s OK if you
do, Acquaviva said, but is the afterlife within your scope of practice?
After
Acquaviva’s talk, an older nurse announced she would change how she treats
LGBTQ people under her care.
“I
still think you’re going to hell, but I’m going to stop telling patients that,”
the nurse told Acquaviva.
Acquaviva,
a professor at the George Washington University School of Nursing in
Washington, D.C., raised the example Tuesday at a panel hosted by
Kaiser Health News on inclusive care for LGBTQ seniors. It was one of many
examples of discrimination that these older adults may face as they seek
medical care.
LGBTQ
baby boomers, dubbed “the Stonewall Generation,” came of age just as the 1969
New York uprising galvanized a push for gay rights. After living through an era
of unprecedented social change, they’re facing new challenges as they grow old.
“Fifty
years after Stonewall, there’s a new generation of LGBT elders who never
thought they’d get an AARP card,” said Nii-Quartelai-Quartey, AARP’s senior
adviser and national liaison on the issue who also participated in Tuesday’s
panel.
By
2030, there will be an estimated 7 million LGBT people in America over 50.
About 4.7 million of them will need elder care and services, according to SAGE, an advocacy
group.
In a
country where most elder care is left to family, many LGBTQ people are
estranged from relatives and don’t have that option. Turning to others for care
— in assisted living centers, nursing homes or hospice settings — makes them
uniquely vulnerable.
“The
fear of living in a situation where they can’t advocate for their own care and
safety is terrifying,” said Hilary Meyer, chief enterprise and innovation
officer for SAGE.
Three-quarters
of LGBT people are worried about having adequate family or social supports,
according to a nationally representative survey of AARP members released
last year.
More
than a third are concerned they’ll have to hide their identity to find suitable
housing as they age. And at least 60% are concerned about neglect, harassment
and abuse, the survey showed.
Often,
those fears are founded, according to results of a forthcoming survey of
more than 850 hospice and palliative care providers about LGBT patients and
family experiences.
“I
think the information we’ve got is actually quite discouraging and quite
concerning,” said Gary Stein, a professor at the Wurzweiler School of Social
Work at Yeshiva University who co-led the project.
Most
providers surveyed said LGBT people received discriminatory care, he said. For
transgender patients, two-thirds said that was true.
Caregivers
reported hundreds of examples of disrespectful treatment, Stein said.
When
LGBT couples would hold hands, staff “might roll their eyes, make faces at each
other,” he said. They often failed to consult the patients’ partners, directing
questions to biological family members instead.
In
several instances, staff would “try to pray” to the patient or their family,
Stein said.
Some
LGBT patients were left in soiled diapers or rationed pain medication in a
“punishing way” because of their sexual identity, he added.
“For
transgender patients, there was lots of discomfort around what to call the
person,” Stein said. “A number of people said patients were called ‘it’ instead
of a pronoun.”
Twenty
states have laws that specifically protect LGBT people against discrimination,
but most don’t, Stein noted. A recently enacted Trump administration
“conscience rule” allows providers to decline to provide care that goes against
their moral or spiritual beliefs. Advocates said the new rule could make it
easier to discriminate against LGBTQ people.
Still,
a growing number of senior housing and care sites are putting
non-discrimination policies in place and training personnel to provide
LGBTQ-inclusive care.
The
SAGE staff has trained more than 50,000 people at more than 300 sites
nationwide, Meyer said. They learn best practices for asking questions that
don’t perpetuate stigma.
“It’s
even something as simple as asking somebody, a woman, if her husband will be
visiting,” said Meyer, noting that the question forces the person to decide
whether to announce her sexual identity. “Having to come out of the closet that
way can be very challenging.”
In a
few high-profile instances, LGBTQ couples or individuals have sued providers
for discrimination.
In
2016, Lambda Legal, a gay advocacy group, sued an Illinois senior residential
facility for failing to protect Marsha Wetzel, 70, a disabled lesbian, from
harassment and violence by other residents. The 7th Circuit Court of Appeals
ruled that a landlord may be held liable under the Fair Housing Act for failing
to protect a tenant from known, discriminatory harassment by other tenants.
Karen
Loewy, Wetzel’s attorney, would say only that “the matter has been resolved,”
and Wetzel is now living at a Chicago-area facility.
Last
summer, in Missouri, a married lesbian couple, Mary Walsh, 73, and Bev Nance,
69, sued a senior-living facility that denied their housing application. The
Friendship Village assisted living center cited a “cohabitation policy” that
defines marriage as between one man and one woman as the reason.
A U.S.
district judge dismissed the suit in January, saying that their claims of
discrimination were “based on sexual orientation rather than sex alone.”
The distinction is important because neither federal nor state laws explicitly
prohibit discrimination based on sexual orientation. The suit has been stayed
pending Supreme Court decisions that could affect the outcome.
In the
meantime, the couple has remained in their single-family home, where Walsh has
developed health problems, said their lawyer, Julie Wilensky of the National
Center for Lesbian Rights.
“They
wanted to be planning in advance so that they would have stability when issues
might come up in the future,” Wilensky said.
Not
every LGBTQ person will want to step forward in the way Wetzel, Walsh and Nance
have, said Loewy.
“When
you feel like you’re being denied care … you may not want to be out there to
wave the banner,” she said.
Finding
an LGBTQ-tolerant facility can be difficult. People are often bound by
geography, and options are limited.
Still,
LGBT people and their families can — and should — have candid conversations
with potential caregivers before they make a choice, Loewy said.
One key
question: Ask what kind of experience staff have working with LGBTQ people.
“If
they say they haven’t [treated any such patients], don’t believe them,” Loewy
said. “You want to hear a real clear commitment to ensuring every resident of
this facility is going to be treated with dignity.”
JoNel
Aleccia: jaleccia@kff.org,
@JoNel_Aleccia
Melissa
Bailey: mbailey@kff.org,
@mmbaily
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